We waited for Elijah for five years. It wasn’t easy getting pregnant as I have a few gyne problems that needed surgery. The doctors plan was was for me to have a five procedure in one operation and once it was corrected we would wait to see if I could get pregnant naturally or if we would do IVF.
On the day of operation, I was already inside the operating theatre. Just before they started the operation, a nurse stopped them and said the urine they tested before I went in was positive for pregnancy.The operation was cancelled and yes I was pregnant with Elijah. That was the biggest shock of our lives. My pregnancy was somehow normal except I had polyhydramnios beginning at 27 weeks. My bag of water ruptured at 36 weeks four days and I had to have an emergency caesarean section.
We didn’t hear Elijah cry, he was very floppy and all we could see were the doctors and nurses rushing to intubate him. We didn’t even see his face as the endotracheal tube and tapes covered his face. He was immediately taken to NICU and was ventilated 24/7. The initial diagnosis was SMA. Elijah had a muscle biopsy when he was three weeks old and was diagnosed with x linked MTM at six weeks old.
It was very difficult to accept that the child we waited for had a life limiting condition, that it is uncertain how long he has got, that any simple infection can kill him. We were told by one of the doctors that he hasn’t got quality of life, that one of the options is to turn him off from the ventilator for his own benefit, so that he wouldn’t suffer. It was very painful to hear all this as you wouldn’t want your child to suffer but Elijah gives us assurance. We look at him and his eyes speak a lot, you can almost feel his inner strength. He is already showing his personality. His eyes light up as soon as he sees us, he likes music, reading books, bath time and watching DVDs. Some of the NICU nurses buys him DVD to watch because they can see how he enjoys it.
We told the doctors that we wanted to take our son home no matter how short or long we have got. That our son’s quality of life rests on the love we give him and the love he gives back. We believe that God has given him to us and can take him back in his own time, that God will prepare our hearts and will take him beautifully when it’s time.
So we headed for tracheostomy when he was three months old. It was the first time we ever saw his face. From then, they started the discharge process which was not straightforward as we needed to find a ground floor property for safety reasons. Elijah was moved from NICU to HDU while we are sorting out all the services that needed to be in place. We were moved to Richard House Children’s Hospice for transition when he was six months old. The hospice played a big role in getting us used to a home setting and building our confidence in looking after Elijah. And finally we were able to take him home when he was eight months old. We spent his first Christmas at home which was priceless.
From then we encountered different hurdles and challenges such as getting the right carers that we can trust, going back to work and the demands of our jobs we have to meet. Sometimes it can be socially isolating and the financial impact of caring for a child with complex needs.
Currently he is under the respiratory team at the Royal London Hospital and the ear nose and throat team and neuro consultant in Evelina Children’s Hospital. At home he is being seen by an occupational therapist, physiotherapist, speech and language therapist, play therapist and the community nursing team. We are also closely working with the GP’s. All together, we are receiving all the support we need from the health professionals.
Inspite of being busy with all the follow ups and clinic appointments, Elijah has continued to grow as a happy boy. He enjoys listening to music, reading books and watching cartoons. His favourites are the Lion King, Jungle Book, Happy Feet, Barney, Peppa Pig, Postman Pat and Little Einstein. He enjoys soaking in the bath and going outdoors.
He loves playing with picture word cards and recognises about 30 of them. Elijah is such a clever boy. At the moment he is attending the toddlers group in the children’s centre near us and totally enjoys mingling with other kids. He also has 21 days a year respite care in Richard House Children’s Hospice which we all look forward to as a family.
Myself and Jaroume have no immediate family here in the UK but we have more than a family with the friends we have. We are so very blessed meeting and knowing amazing people because of Elijah. Having Elijah made us appreciate life even more.
We are humbled by his presence as he joyfully takes life as it is. For Elijah, we make everyday his birthday, Christmas day and all the special days we can have. The biggest lesson we learned is to live and love as if there is no tomorrow.